East Midlands: Survey highlights plight of carers

Guardian News

Published:07:00Thursday 15 May 2014

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The national disability charity Vitalise has thrown its weight behind the Alzheimer’s Society’s and Public Health England’s Dementia Friends Campaign, and is highlighting the enormous emotional and physical toll that a lack of respite is having on the nation’s carers.

The respite break charity’s own study has revealed that an astonishing 4 out of 10 (39%) of carers have not taken a single day off from caring in the past year.

As the Dementia Friends Campaign focuses on the impact of caring for a loved one with dementia on the nation’s economy, Vitalise is throwing a spotlight on the personal toll of caring for a loved one with a disability.

The study painted a stark picture of the emotional and physical strain on carers who are unable to take breaks from their caring duties. More than 80% said they put the health of the loved one they care for before of their own health and almost 60% said a lack of time away from caring led them to feelings of depression. 60% said long periods without a break resulted in their getting angry at the person they care for.

In contrast, when asked about the beneficial effects of respite, nearly half (46%) of all carers surveyed said it made them feel more able to cope and over a third said they felt happier and healthier. However, over a fifth (21%) said that afterwards they felt guilty that they had left a loved one in order to take time off.

The survey also highlighted the barriers preventing carers from seeking respite, including the key issue of fears over the quality of respite care. The biggest barrier was shown to be carers’ concerns that nobody else would be able to care for their loved ones, with 46%, followed by guilt at leaving them (39%) and worry that they would not be looked after properly in a care home (23%).

An estimated 6.5 million people - 1 in 8 of the adult population - act as unpaid carers for older, ill or disabled loved ones in the UK. Carers UK estimates that carers save the UK economy 119 billion each year - an average of £18,473 per carer. People providing high levels of care are twice as likely to be permanently sick or disabled as the general population. 625,000 people suffer mental and physical ill health as a direct consequence of the stress and physical demands of caring.

Vitalise is backing the Dementia Friends Campaign in its mission to recruit a million ‘dementia friends’ to support the growing number of people with Alzheimer’s and dementia. The charity is also calling for more effort to raise awareness among all carers about the support available to them, including funding for essential respite breaks.

Vitalise Chief Executive Chris Simmonds said:

“Vitalise is proud to throw its weight behind Dementia Friends. This campaign is all about treating people with disabilities with dignity and respect – something we’ve been doing for over 50 years now.

“Providing more support for people with dementia in their daily lives is important, but just as important is the need to support the loved ones who care for them too. Respite breaks are absolutely vital in enabling carers to carry on coping.

“But our survey clearly shows that many carers are not taking breaks because they are terrified of what might happen to their loved ones if they do. They simply have no confidence in the quality or suitability of the respite care on offer.

“We are doing our bit to support people with Alzheimer’s and dementia through our special Alzheimer’s Weeks, which enable couples coping with dementia to rest, recuperate and rediscover a loving connection.

“But unless the fundamental issue of quality in respite care is addressed, the strain on carers will only get worse. Access to regular, good quality respite breaks for all people with disabilities and those who care for them should not be a luxury but an absolute essential in enabling families affected by disability to carry on coping.”

Vitalise is a national charity providing essential breaks for people with disabilities and carers. Vitalise provides essential short breaks in a holiday environment for people with disabilities – including Alzheimer’s and dementia - and carers at three accessible UK centres, with 24-hour nursing care on-call, personal support and a range of accessible excursions, activities and entertainment.

People with disabilities and carers wanting more advice and information about Vitalise breaks, including Alzheimer’s Weeks, are requested to call 0303 303 0145, email bookings@vitalise.org.uk or visit www.vitalise.org.uk